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Rachel--24

Omg...i Might Be On To Something

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Lisa....I "see" you. :D

Someone was asking.....about Zeolite. (April?)

Are you still taking it??

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So Great!! one of my fillings broke today! I think I swallowed some. It isn't a mercury filling it is white. Does anyone know if this could make me sick? I guess I just might have to wait and see. Dumb dentist.

Was this one of the ones that you got after some of your amalgams were removed??

I dont think I would worry too much...at least it wasnt one of the mercury fillings.

By the way....how are you feeling now? Are you gonna be continuing with the removals at some point? Did Dr. M. ever say anything about that?

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Paula....which ones did you get?? Peptizyde and Zyme Prime?

Anyways, keep in mind that they are designed to break down the proteins (gluten, casein, soy, etc)...and Zyme Prime (if you got it) breaks down the carbs, lactose and all the rest.

So if your problem with cheese is due to the casein...then yeah...the enzymes will help. BUT...if your problem with cheese is MOLD..thats a whole different thing.

The enzymes wont help with mold....and since you have a history of reacting to mold....you might wanna be careful with the cheese. ;)

I read this about 2 hours ago before running out the door to a baseball game. By the time i was at the game i was crying and hubby was like what is wrong lol. I didnt even think of the mold issue/ I also wasnt thinking and ordered the afp peptizyde, i guess i wont be taking those either lol.

I really hate mold at this moment. Could i at least take them to eat soy again lol.

Lisa....I "see" you. :D

Someone was asking.....about Zeolite. (April?)

Are you still taking it??

It was me that was asking.

paula

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I think around here we would call that "carlaing"?? :unsure:

I'm not too familiar with moderation. :P

I still dont understand how anyone can take a couple bites of a donut and save the rest for later?? WTH?? :blink:

Ditto! :P I don't get that!! I would be lucky if I stopped at ONE!

The pre-op went fine, it was for the D and C. I'm really anemic again...no surprise there. So the gyno wants me to see the hematologist to get more iron IV's. My ferritin is 4 and every other number other than hemoglobin is low. My hemoglobin is 12ish, which is higher than we thought, but still low for me.

I really hope you start to feel much better after the D & C and the iron iv's!

Lisa....I "see" you. :D

Someone was asking.....about Zeolite. (April?)

Are you still taking it??

Paula was asking about it, but I think Lisa takes it. I haven't tried it yet.

I'm still trying to decide if I should try the Cowden protocol.

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I read this about 2 hours ago before running out the door to a baseball game. By the time i was at the game i was crying and hubby was like what is wrong lol. I didnt even think of the mold issue/ I also wasnt thinking and ordered the afp peptizyde, i guess i wont be taking those either lol.

I really hate mold at this moment. Could i at least take them to eat soy again lol.

Awww Paula....I'm sorry. :(

AFP Peptizyde is the one I take. The only difference between AFP and regular Peptizyde is that AFP is formulated for people who are sensitive to phenols. The AFP enzymes arent derived from fruits....thats all....I would recommend either one.

Yeah....you can still try it for soy. ;)

You can try it for the cheese too....just dont overdo it and see how you feel. Do the "Carla" thing and put the cheese away after a couple pieces. ;)

I'm having difficulty with that right now....I'm totally addicted to cheese.:ph34r:

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The pre-op went fine, it was for the D and C. I'm really anemic again...no surprise there. So the gyno wants me to see the hematologist to get more iron IV's. My ferritin is 4 and every other number other than hemoglobin is low. My hemoglobin is 12ish, which is higher than we thought, but still low for me.

Her main concern with the whole D and C is malignant lining. She said other than that, she's not that concerned about the procedure itself and risks. I will have to start BCP's Monday night so we can stop the bleeding from being this out of control again.

I'm going to fax the blood work over to Dr H and see what they say.

Julie, I'm okay. Just really really tired. And in a lot of pain lately.

Glad the pre-opt went ok. I am crossing my fingers that the D&C and the BCP and the iron IVS will all help.

Wish you didn't have all the pain :(

(((((HUGS)))))

Julie, sorry to hear you've had a bad month with the angio. :(

One day you might see me post that "I can eat dairy again"...FOR REAL. :D

Thanks Rachel.

You will have to name that thread OMG Part 2 :lol:

Glad you are getting out around to oher threads on the board, it can be scary to venture away from here.

Hey everyone

So Great!! one of my fillings broke today! I think I swallowed some. It isn't a mercury filling it is white. Does anyone know if this could make me sick? I guess I just might have to wait and see. Dumb dentist.

Hi Lisa, I was just wondering where you have been.

Sorry about your filling :( I guess anything can make any of us sick, I hope it doesn't.

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Hi, another quick drive by. Good appointment today with Dr. E. She said overall there is improvement, and a half dozen or so of the supplements are no longer needed. Major stressors are three bugs: babesia (the #1 problem), chlamydia pneumonie, and mycoplasma, and the heavy metals. Parasites and yeasts were fine, digestion and other things mostly better than before.

Enula tests very well for all three infections, but not taking it with zithromax though it does work well with the andrographis. So we'll see what my LLMD wants to do. She said looks like based on ART that I would have allergic reactions to Mepron.

All for now,

Sherry

Hi Sherry and all-

Well, guess what? No surprise, I have Lyme!!!! And Babesia and Bartonella. And I am on anti-biotics!!! So, I eat all of my words. I am very late stage Lyme...also no surprise.

I wanted to thank all of you for being patient with me, looking at my blood work and gentling guiding me toward the inevitable diagnosis that i was denying. Thank you.

Here are some questions for all of you:

1) What is Enula?

2) What is ART?

3) I have tried Natto K by Enzymedica just because it said something about protecting the heart. Do any of you take this and what do you take it for?

4) Because of all of my optical, neurological symptoms, my LLMD wants to eventually move to IV abx. Any advice for me...or can you tell me what I might expect from herx or fatigue or side effects.

5) I am also taking Cat's Claw, Andrographis and Resveratrol and probiotics, zinc, selenium, molybdenum and milk thistle (vit b gives me heart palpitations and I have had mixed reviews with magnesium/calcium. Has any one tried Smilax for Herx? How about Aremisinin for Babesia? How do you feel you did

6) I read that it is not good to take Vit E, ALA or COQ10 with Mepron ( I am on Mepron). What supplements do you recommend?

7) I have a possible mercury filling, do I have to get this removed?

Any input would be greatly appreciated. And Thank you.

Kassandra- I hope you are doing OK.

Nancy

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Well, guess what? No surprise, I have Lyme!!!! And Babesia and Bartonella. And I am on anti-biotics!!! So, I eat all of my words. I am very late stage Lyme...also no surprise.

Nancy, glad you got a diagnosis.

Carla usually know the answers to all the lyme questions and she is out of town, I'm sure everyone else will pass on what they know.

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So if your problem with cheese is due to the casein...then yeah...the enzymes will help. BUT...if your problem with cheese is MOLD..thats a whole different thing.

The enzymes wont help with mold....and since you have a history of reacting to mold....you might wanna be careful with the cheese. ;)

I think the mold is more of an issue w/ aged cheeses. (Well . ..definitely an issue)

But I've seen so-called "fresh" cheese, like mozzarella and feta, in the OK column for ppl w/ mold sensitivities.

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Awww Paula....I'm sorry. :(

AFP Peptizyde is the one I take. The only difference between AFP and regular Peptizyde is that AFP is formulated for people who are sensitive to phenols. The AFP enzymes arent derived from fruits....thats all....I would recommend either one.

Yeah....you can still try it for soy. ;)

You can try it for the cheese too....just dont overdo it and see how you feel. Do the "Carla" thing and put the cheese away after a couple pieces. ;)

I'm having difficulty with that right now....I'm totally addicted to cheese.:ph34r:

Its ok, i have my meltdowns from time to time lol.

Ok i will carla-ing my cheese. WHat would be the best cheese to try to start of with. The only bad thing is what if i can eat cheese with these peptizydes, will i gain lots of weight back lol

paula

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Mine was in the teens! :o

What about artemesia for babs?

Kassandra, are you supplementing Vitamin D then? I'd think it would be pretty important to do that, from what I've been reading.

I think Dr. E tested for a number of herbals last winter, and probably included artemesia and cumanda, but I am not sure. I know she has the Nutrimedix sample box on her shelf and went through tons of things most of which my body didn't like. I'll check with her next time.

Sherry

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Well, guess what? No surprise, I have Lyme!!!! And Babesia and Bartonella. And I am on anti-biotics!!! So, I eat all of my words. I am very late stage Lyme...also no surprise.

I wanted to thank all of you for being patient with me, looking at my blood work and gentling guiding me toward the inevitable diagnosis that i was denying. Thank you.

Here are some questions for all of you:

1) What is Enula?

2) What is ART?

3) I have tried Natto K by Enzymedica just because it said something about protecting the heart. Do any of you take this and what do you take it for?

4) Because of all of my optical, neurological symptoms, my LLMD wants to eventually move to IV abx. Any advice for me...or can you tell me what I might expect from herx or fatigue or side effects.

5) I am also taking Cat's Claw, Andrographis and Resveratrol and probiotics, zinc, selenium, molybdenum and milk thistle (vit b gives me heart palpitations and I have had mixed reviews with magnesium/calcium. Has any one tried Smilax for Herx? How about Aremisinin for Babesia? How do you feel you did

6) I read that it is not good to take Vit E, ALA or COQ10 with Mepron ( I am on Mepron). What supplements do you recommend?

7) I have a possible mercury filling, do I have to get this removed?

Hi Nancy,

Hopefully Carla will add to this when she gets back. Congratulations on the diagnosis and I am really happy you have found an LLMD and are into treatment. You are welcome by the way!

Enula is a fairly new herbal treatment in the Cowden herbal protocol for lyme, the product is a Nutrimedix herbal. It's especially for babesia.

ART is a form of muscle testing that a number of us have had. Rachel, can you give a better explanation? It's an alternative approach that helps us know what is stressing our bodies and what treatments are best for our body.

I am taking nattokinase by Jarrow Formulas. Lyme causes fibrin deposits that prevent good blood and lymph flow and the bugs also hide behind the fibrin so that the immune system can't reach them. Natto breaks up the fibrin. I am doing very well on it, it is is definitely improving things for me as evidenced in my Chinese gua sha treatments (aimed at the same type of problem).

Well a lot can be said about herx. Everyone will be different but typically we all have die-off effects from killing the lyme. Symptoms are flu-like and/or similar to the lyme symptoms but more intense. After the herx, one usually feels better than prior to it, and then it cycles. Carla can predict her cycles; I've rarely been able to.

There's a number of detox things we do that help with the herx symptoms. Drinking lots of water, drinking lemon water, taking epsom salts baths, coffee enemas, dry skin brushing, and taking binders like chlorella, charcoal, pectin can all help.

I haven't taken Smilax or artemesia (well at least not recently) but I've been on most of the other things you mentioned. Cat's Claw helped me hugely, but when I did ART testing last winter I did not test well for it so stopped. But I am doing very well now on andrographis.

I'm not sure about the mercury filling. Most with lyme also have some heavy metal toxicity as the two are interrelated. What did your LLMD say? I have had my fillings removed and have been chelating but metals are still an issue.

I've not been on Mepron so am not sure about supplements. Kassandra is on it, and maybe Carla still is.

Sherry

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....or Cumanda??

Sherry....have you ever tried (or been tested for) Cumanda?? Some people have had good results.

Can you do any herbals alongside the abx?? I dunno about that part.

Dr. E tested me for a whole bunch of herbals, and I am guessing but not sure that included cumanda. I'll have to ask. ART showed a good combo of zith and andrographis last winter, and it must have worked well because now only the babs shows up on ART. :)

Sherry

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Nancy,

Glad you got a diagnosis and are starting treatment.

Sherry,

Good news that only the babs is showing up now.......hopefully that will stay that way. :)

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ART is a form of muscle testing that a number of us have had.

Chinese gua sha treatments (aimed at the same type of problem).

After the herx, one usually feels better than prior to it, and then it cycles. Carla can predict her cycles; I've rarely been able to.

Sherry

Sherry and all-

Thanks for all of the good information. Where can one get Chinese gua sha treatments? (I'll google?). And do chiropractors do ART muscle testing? I think I know a woman who does this.

I know this doesn't seem to come up much, but I can't help but wonder about my future, my prognosis. Since things got really, really bad for me about 2 years ago now, I have not been able to work, let alone get out of bed some days and I loved my career and I miss it.

So, my question is...are you able to work? Although you still cycle, are you able to function? How is your quality of life? Have you regained some or a lot of what you had lost cognitively? How often do you cycle? I want to hope but I want to be realistic as well.

Nancy

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And do chiropractors do ART muscle testing? I think I know a woman who does this.

Not everyone who does muscle testing does ART (Autonomic Response Testing). You'd have to call and ask. Dr Klinghardt was one of the developers of this method of muscle testing.

The Dr that Sherry and I see is also a chiropractor and she trained under Dr K.

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Well, guess what? No surprise, I have Lyme!!!! And Babesia and Bartonella. And I am on anti-biotics!!! So, I eat all of my words. I am very late stage Lyme...also no surprise.

Nancy,

Glad you got your answer. :)

Most people do get the answers once they start testing for these things. Unfortunately, alot of people just arent aware of how to go about getting tested properly. I'm glad you found out.

1) What is Enula?

Nutramedix Enula is the newest antimicrobial herbal tincture used in the Cowden Protocol. The Cowden stuff is all herbal. Enula is still pretty new and is supposed to be an effective treatment for Babesia in particular.

2) What is ART?

ART= Autonomic Response Testing. Its an advanced form of muscle testing...developed by Dr. Klinghardt. A good ART practitioner can identify which things are causing the greatest amount of stress to your autonomic nervous system....in a matter of minutes. Lyme and all co-infections are tested as well as fungi/molds, heavy metals, parasities, viruses, etc.

Basically anything can be tested....including foods.

If, for example, Babesia is determined to be the biggest stressor to your system...the ART practitioer can then determine which treatment is most effective for you. My ART practitioner will have all of the various treatment options for each infection and they will all be tested to see which one is best tolerated and which one is most effective.

I get tested this way for *everything*. For me its been very helpful so far. I have been quite sensitive to most things so prior to ART I was having difficulties with every form of treatment I tried. With ART I've been able to avoid taking things which make me feel worse....I only take what tests well for me.

If you check out LymeNET you will find several members there who use ART...and who have found it to be very reliable and helpful in guiding them through treatment.

Not everyone will respond well to the various treatments.....so ART helps to identify which antibiotics or herbals will help....and which ones will actually cause even greater stress to your system. The ones which test negatively are the ones that should be avoided.

It can also tell you if mercury and other metals are an issue.....and if so...how much of an issue?? What treatment should you use to remove metals? Where are the metals located? All of that stuff can be determined during an ART session.

Hint: Nearly every person with chronic Lyme has some issues with heavy metals....its part of the chronic lyme picture. Its not just about the infections.....its also about toxins in the body. Chronic Lyme is multifactorial.

You can Google "Autonomic Response Testing" for more detail on ART.

3) I have tried Natto K by Enzymedica just because it said something about protecting the heart. Do any of you take this and what do you take it for?

For people with chronic illness its usually used to address hypercoagulation (sticky blood). People with Lyme (or other chronic infections), heavy metals, or other conditions involving toxins tend to have coagulated blood.

What that means is that the immune system is producing too much fibrin into the blood vessels....the fibrin coats the walls of the capillaries and the result is thickened blood.

When the blood is thickened, nutrient and oxygen delivery to muscle, nerve, bone and organ tissue is compromised.

When there is a chronic infection such as Lyme, the immune system is producing excess fibrin in an attempt to "wall off" the bacteria. The bacteria can "hide" beneath layers of fibrin. Its an ideal situation for Lyme (or other pathogens)....and not such a good thing for us...or for the immune system.

Natto K is one of the enzymes used to treat hypercoagulation. The enzyme breaks down the fibrin so that the blood can flow more freely. By breaking down the layers of fibrin the immune system can then "see" the bacteria which may have been hidden....and it can then actively fight the infection.

Hypercoagulation should be addressed during Lyme treatment as it will help the immune system put up a stronger fight and it will also allow for antibiotics and antimicrobials to reach the bacteria.

If the blood is flowing more freely it allows nutrients to get to where they need to go....and it allows for the meds to reach the targeted infection.

Natto K (or any enzyme used to break down fibrin) should be taken AWAY from food....otherwise it will be used during digestion...instead of addressing the fibrin issue.

You can Goggle "hypercoagulation" for more info.

Heres a list of the most common enzymes my Dr. uses to address hypercoagulation.

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3) I have tried Natto K by Enzymedica just because it said something about protecting the heart. Do any of you take this and what do you take it for?

I take Natto K by Enzymedica also. I take it for fibrin and heart health. I have high cholestorel that I refuse to take prescriptions for and I figure I need all the help I can get!

I am glad you got a diagnosis and this is a great board to share and bounce ideas - since a lot of us are going through the same situation!

Hope this helps.

You very good at breaking down all this complicated information and making it easy to understand!

HAPPY BD KASSANDRA!

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....or Cumanda??

Sherry....have you ever tried (or been tested for) Cumanda?? Some people have had good results.

Can you do any herbals alongside the abx?? I dunno about that part.

Dr. E tested me for a whole bunch of herbals, and I am guessing but not sure that included cumanda. I'll have to ask. ART showed a good combo of zith and andrographis last winter, and it must have worked well because now only the babs shows up on ART. :)

Sherry

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Sherry and all-

Thanks for all of the good information. Where can one get Chinese gua sha treatments? (I'll google?).

So, my question is...are you able to work? Although you still cycle, are you able to function? How is your quality of life? Have you regained some or a lot of what you had lost cognitively? How often do you cycle? I want to hope but I want to be realistic as well.

Nancy

I'm usually in China which is why I am doing gua sha--its a folk remedy but highly regarded in Chinese medicine.

Yes I am able to work but I have periods where I can't. I have had some really good periods, actually several years, after starting antibiotics. I have been much more unstable since going gluten free last year, but I think it is because my immune system--my whole system--is readjusting. I had plateaued on treatment--was doing pretty well but couldn't get off antibiotics. So we are working on finding the pieces to the puzzle that will help me go farther.

It took me 8 months on antibiotics to start to feel better, and after a year and a half I was doing fairly well and was virtually pain free though not high in stamina.

Sherry

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Hello everyone!

The biopsy went well I think. I won't know anything until next week though. The ampulla is still abnormally large so he did indeed take samples of it. He also took samples of my esophagus.

Judging by how painful my throat and chest is today, I'd say I know exactly where he took the samples from, lol. My upper throat feels like someone stabbed it...I think they used a larger endoscopy tube than they've used on me before...he said this was new equipment that enabled him to take an ultrasound of the ampulla, so I'm guessing the tube was bigger. It certainly LOOKED bigger than I remembered, lol! :lol: Anyway, I think I started coming out of it while the tube was still in, but then the next thing I remember is being in the recovery area.

When I swallow it feels like something is stuck in my esophagus...right about where the boobs are, lol. And the upper throat is starting to feel the same way.

If my co-worker was here this week, I would have definitely stayed home...still dizzy and feeling really tired.

I DID sleep a lot yesterday though, lol. I ate, then layed down on the couch and fell asleep for about 3 hours. I also slept pretty well last night. I woke up a lot but fell back asleep, and I think I must have gotten up about 4 times to go to the bathroom, lol.

OH....and I found out from reading a post somewhere that the "OMG thread" is over 2,000 pages....all about CORN!! :blink:

OMG....I thought that was freakin hilarious. :lol:

Yeah....can you imagine if we'd never got past the corn?? :huh:

and....OMG...I might be able to eat dairy again. :P

:lol:

Well, guess what? No surprise, I have Lyme!!!! And Babesia and Bartonella. And I am on anti-biotics!!! So, I eat all of my words. I am very late stage Lyme...also no surprise.

I see that your questions have mostly been answered, so I basically just wanted to say congratulations on a diagnosis (sounds weird doesn't it)...knowing what you have is the first step to fixing it!

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Oh, and,

HAPPY BIRTHDAY KASSANDRA!!!

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